Friday, June 28, 2013

It might take a village to raise a child, but to raise a
child with special needs, it takes a team. A specialized team. One team member
to address feeding and speech, one to manage gross motor development, one for
smaller fine motor movements, and one for special instruction. One such team
became a part of our lives back in 2009.

I don’t remember exactly how old Maya was when she started
receiving therapies through Early Intervention, but I would guess it was right
around 10-11 months old. She was little and adorable and we knew that she had
some delays, but really had no idea how significant her challenges were or for
how long she would need therapy. I had
mixed feelings about the therapies, some of which I’ve already shared. We had a
very full schedule and it was difficult not to have some resentment over being
tied to so many appointments per week, especially when I saw other women with
babies in the neighborhood meeting for coffee, having playdates in the park, or
meeting up at the playground. I would have fleeting interactions with them as I
whisked tired Maya out for 30 minutes between commitments, determined to get
some “normal” time into her life.

While the therapies were sometimes a source of frustration
for me, the therapists (by and large) were not. Earlier this week I randomly
ran into one of them in the city, and as I hugged her I couldn’t help but think
that bystanders who witnessed the vigor of my attack/embrace must think that
she was a long lost best friend . . . not my child’s former speech therapist.

It got me thinking about Maya’s team of EI therapists. We
lost a few (that’s a nice way of saying we gave a few the boot) before finally
settling with the team that would carry us through until preschool, the team
who would teach Maya and help her to grow stronger and smarter, the team who
became my friends and sounding boards.
Each one of these women brought something to the table, and each played
a formative role in the way that I interacted with my child.

Our EI therapists didn’t just teach me about exercises and
development and milestones . . . they taught me how to be Maya’s mom, how to be
the confident, capable mom of a complicated child. Certainly, I would have been her mom (and a
good one at that) with or without them---but they gave me practical guidance,
tangible ways to aid in her progress, and (of equal importance) the camaraderie
and support that I so needed as I found my footing over those early years.

The therapists had the perspective and knowledge that no one
else did---certainly not me, or our family, or friends with typical kids, or
even our pediatrician. When I asked “have you worked with other kids who xyz?” I would get a straight, honest
answer---and if the answer was yes, we knew what to try . . . and when it was
no, I got my first glimpses into just how outside-the-box Maya would turn out
to be. They could draw from their
experiences with other kids who followed similar paths to a certain skill, they
knew which toys or household items offered the most bang for the buck, and they
could see when we were working hard, even if progress wasn’t coming as fast as
we had hoped.

Together, the therapists and I learned when it was
appropriate to push Maya, and when to back off.
We worked as a team, each provided the other with new bits of
information about what she was able to do, or secret motivation tips. Every
time that they confirmed my suspicions (It
seems like she might drool more than other kids her age---have you noticed that?
I’m not sure if that should be slowing down now.) or agreed with my
assessment of progress (Did you see her
reach across midline? Was she able to do that last week?) I became more
confident in my ability to collect data, the sharpness of my observations, and
the accuracy with which I would be able to discuss my daughter with the countless
doctors that we were frequently visiting.
I can only see it now, in hindsight, but I needed the validation that
they provided when they saw me working with and interacting with Maya—their
approval helped me rest ever so slightly easier, knowing that we were doing the
absolute best that we could.

Well, most of the time.

Other times we weren't doing the best that we could. I was
frustrated or Maya was having a week of temper tantrums. I was at the end of my
rope with appointments and reports and bad news and lack of progress, and the
therapists became my sounding board. They were the only adults that I was
interacting with, they were in my home, and they knew everything about
Maya---it made sense that they were often my news-guinea-pigs . . . the first
people that I would tell about a genetic test we were running, or an evaluation
that had yielded surprising results.
Their thoughtful (as in full-of-thought,
not as in kind) reactions, follow-up
questions, and words of wisdom helped me to process things more deeply and
figure out exactly how I would relay the information to our family and friends
(and readers).

The therapists balanced out the
well-meaning-but-not-very-informed input from those not privy to the reality of
raising a child with special needs. Those who weren’t in my living room, on our
gym mats, watching me stretch and position and move Maya’s limbs, who would say
“Well, my doctor said that they’ll basically learn everything themselves with
enough tummy time . . . maybe if she spent more time on her belly it would
help?” Those who weren’t in my kitchen,
as I sat across from Maya with chewy tubes and used one hand to steady her head
and open the side of her mouth while she cried and I tried not to clench up,
who said “My friend’s daughter did the same thing---she was a really picky
eater but they just kept offering the same foods and eventually she realized
that she had to eat what they gave her.”

Collectively, the therapists saw my eyes fill with tears
more than anyone, ever. (I am generally not a crier.) And they did a great job continuing
with rational conversation and pretending that it wasn’t happening, which was
the exact thing that I was hoping that they would do.

The therapists loved Maya, despite the fact that they weren’t
obligated to do so, and that expression of love gave me the hope and belief
that others would see how amazing she is and love her, too. They treated her with tenderness, but also
didn’t let her use her extra challenges as an excuse (No, you are not too tired to clean up, get your little head off of that
table, sit up, and help put these markers away.). They appreciated her sass and jokes, but
forced her to get down to business and do her work. They treated her like family, and (I believe)
they looked forward to the time that they spent with her. The honesty of their feelings for Maya—the fact
that they knew all of her challenges and struggles, all of her stubbornness and
sass, the great stuff and the not-so-glamorous stuff--- and they welcomed her
with open arms and loved her without conditions---it touched one of my first,
deepest, unspoken fears about having a child with special needs: what if people don’t love her the way that
they would have if she was “typical”? What if she doesn’t have friends? The EI therapists were her first friends.

For the therapists reading this, the ones who go above and
beyond, the ones who love their little patients and listen to their (sometimes
fragile) parents, the ones who go home at night and think about the families
that they work with . . . thank you. I’m
thanking you on behalf of the parents who are tired, or angry, or stretched too
thin, or emotional, or shy, or introverted . . .the parents who aren’t
remembering (or aren’t able) to thank you themselves (I have been all of those
parents, by the way). We know that it’s
not in your job description to love our kids, or to be our friends, but you are
in a unique position---kicked into the inner circle of a family in crisis---and
the ways that you offer support are making a critical difference in our lives .
. . even if we can only see it in retrospect. Keep up the good work. You are changing lives.
Thank you.

Friday, June 21, 2013

In my time blogging about raising a child with special
needs, I’ve received a good number of emails. There are several recurring
themes to these emails: some about assistive technology, some about looking for
specific resources or online communities, and several from friends and family
members whose loved ones have recently had a child diagnosed with special
needs. In this last group of emails, people often express their love and
concern for the parents of the newly diagnosed child and ask me “What should I say
to them?”

Another writer answers that question this week in her
article “5 Things That You Can Say To The Parent Of A Child With Special Needs.”
Disconcerting, though, is the fact that although I am indeed “the parent of a
child with special needs” I would not be jazzed about receiving some of these suggested comments. Let me explain why, and then I’ll offer my own thoughts on
what to say.

First, don’t tell me “I’m sorry.” Like, ever. “I’m sorry” leaves a disturbing amount to
interpretation. Are you sorry that my kid is lying on the ground and throwing a
fit? Ok, but maybe “we’ve all been there” would be more clear. Are you sorry
that I’ve spent so much time in therapy this week, or that we had 2 doctor’s
appointments yesterday, or that I’m stretched so thin that we can’t get
together? Maybe “I’m sorry that things are so hectic for you right now” would
fit. Are you sorry that my kid has
special needs? Well, you can keep that to yourself. To me, “I’m sorry” comes across as “I’m sorry
that your kid is the way that she is.” or “I’m sorry that you are burdened by
your child.” As I hear it, it’s an
insult to my child (and a pretty bad one at that). I don’t want your sympathy,
and Maya is not a circumstance to feel bad for, she is a lovely little
girl.

Second, please don’t ask for her diagnosis. It’s not
appropriate to ask about other people’s medical information. Asking for a
diagnosis is not making small talk, or breaking the ice----it’s asking about
her private medical business. If you want to make conversation that
acknowledges her challenges or “break the ice” you could ask about something
specific, I guess, like “Is it hard for her to climb those stairs?” or “How
long has she been using her communication device?” If I want to share information about her
diagnosis, I will----if not, asking makes things a little awkward. (PS-If you’re
new here, Maya doesn’t have a diagnosis, which is particularly fun to explain
to bold strangers. One time, in response to hearing that Maya didn’t have a
diagnosis (after she asked), a woman asked me if I had ever taken her to a doctor. A woman I had
never met asked me this. While I was eating in a diner. With my family.
Seriously.)

Now, possibly disregard everything that I just said . . .
because while all of the above rings true for me, it might not for others.

Undoubtedly, there are some SN parents who would appreciate “I’m
sorry” and would enjoy being asked about a diagnosis. (If you’re in doubt, see
the little conversation on our Facebook page last night.) I would hate those
comments, but some would love those comments, while some just want to be left
alone (ok, that’s often me as well, given my anti-social tendencies. I’m
working on it.) and others are so happy to be out talking to other adults that
they don’t care what the conversation is even about. So . . . I guess we’re all
different? Who would have thought!

The bottom line is that there are no universal things to say
. . . parents of kids with SN are as diverse as any other group of adults (parents
of kids with brown hair, parents of kids who wear shoes, etc). Our commonality
(and, to be fair, it’s not one to be underestimated) is that we have a lot on
our plates . . . we are short on time and long on stress, we struggle with more
than our fair share of emotional turmoil, we are usually fighting several
battles at once, and we are worried for our children and their futures. But
everyone responds to these stressors, and to fear of the unknown, very
differently. Some people want reassurance (this will all be ok), some want
sympathy (this is terrible, isn’t it?). Some people want to talk about the
issues (tell me about the diagnosis), and some want to ignore them (isn’t the
weather lovely today?).

For those of you who have come here through a search engine
because you’re actually trying to find the right thing to say, I offer this:
just love the kids. Nothing meant more to me (and continues to mean more) than
friends, family, and coworkers doting on my kid. All parents enjoy seeing
others care about their kids, but for me (and, I imagine, for many other SN
parents) the ideas of acceptance, inclusion, respect, and love are especially
loaded.

For those of you who are just wondering what to say to the
random SN parent that you might bump into at the playground, I would go with
something simple. You know, like “Hi”.

Monday, June 3, 2013

Children with complex communication needs (CCN) need various
devices, tools, and supports in order to communicate effectively and to access
the curriculum in their schools. This is a simple, solid, well-researched
principle and it is the legal right of a child with CCN to have a device and the support services necessary to
implement the device (staff training, family training, etc.).

Between the children and the devices stand The Gatekeepers . . .
the professionals (generally SLPs) employed by the DOE who have the
responsibility of evaluating children (of various ages), assessing their
strengths and weaknesses (despite having just met them) and formally
recommending an exact communication device/app that will serve them for at
least the next year (after only working with them for an hour or two). It’s a big job. A huge job. The correct recommendation can allow a child to suddenly
answer questions in class, make small talk with her teacher, ask questions, and
make connections. A faulty recommendation could be too complicated, left to
become an expensive paperweight as it is abandoned by the staff or the user . .
. or it could be too simple, quickly rejected by a child who tires of saying “Today
is Tuesday.” “Today is cloudy.” “I want juice.”

This mistrust---it is not paranoia. It is based on countless
emails (from around the world), an unfortunate number of personal
conversations, and two startling encounters that I have personally had with the
gatekeeper who would be in charge of Maya’s AAC (I said “would be” because this
person would actually have the power to determine what Maya is allowed to use,
if I hadn’t decided to reject her recommendation and go rogue). Seriously, the
most recent exchange---in which she deemed
Maya’s AAC device inappropriate and attempted to replace it with something else---will
blow your mind. But I’ll get to that in a minute.

I want to be clear on this: I do not believe that the
gatekeepers are intentionally trying to foil children with CCN, to withhold
resources from them, to impede their ability to communicate and to make
progress. I believe that they want to help, and I believe that they think they
are helping. But the people who rise to the position of gatekeeper have
typically been working “in the system” for a while, and they are frequently set
in their ways. They often have a handful of go-to items that they recommend (you get a TechSpeak, and you get a
TechSpeak, and you get . . .um . . . a TechSpeak). They can be
overconfident---sometimes brazenly so---and are often unreceptive to concerns/push
back from parents (and sometimes even from school staff) who they view as
either uninformed or misinformed about AAC. Since the iPad boom, many
gatekeepers are now borderline paranoid that families “just want an iPad” (that
was basically the opening line of our assessment last year---“we’re not going to
just give you an iPad”---despite the fact that I hadn’t requested, or even mentioned
an iPad.)

A professional who is overconfident, who tenaciously adheres to
her recommendations without accepting input from others, who assumes that others are
misinformed, who becomes defensive when families express a difference of
opinion, and who enters a new situation with the predisposed assumption that
she’s going to offer one of three standby items . . . well, that’s not a great
professional. Now if that same professional is in charge of speaking for
children who have no voices of their own . . . well, that’s downright
dangerous.

My daughter, Maya, is a 5 year old with complex communication
needs. She had a (terrible) assistive technology evaluation from the DOE last
year, in which I fought for a dynamic device that she would be able to grow
into, and the SLP in charge insisted that a static 32-button device was all
that she needed, and all that she would be capable of using for the upcoming
year. (The above paragraph is a fairly accurate description of L, our evaluator
from the DOE.) I have since learned that preschoolers are notoriously
underserved with regards to AAC. Assumptions about starting slowly, not
overwhelming the learner, proving competency on low tech/no tech systems before
progressing to dynamic displays are so ingrained that many old-school
evaluators don’t even think of these things as biases, they think of them as facts.
(sigh) After this disheartening
evaluation I realized that the only people who would presume competency and have audaciously
high expectations of Maya were my husband and I. I logged a ridiculous number of hours
researching AAC and got Maya set up on a communication app that has proved to
be wildly successful for her. The video below, presented at an AT conference on April 27th, shows how she became
an independent communicator (and it’s pretty inspirational, too). After our
presentation we were approached by several DOE employees who commended us as a
shining example of how AAC can be successful with early learners.

If you don't want to watch the whole thing, you should just fast forward to something in the last 2-3 minutes and watch for 30 seconds. It will give you a frame of reference for the madness below.

So imagine my surprise when,10 days later, I received a call
from L, informing me that she had just finished Maya’s AT re-evaluation. (I had requested the evaluation months
earlier as a formality, a part of the Turning 5 process, but was not notified
ahead of time that the evaluation would occur that day—otherwise, I would have
been there.) When I requested the
evaluation, I had assumed that the evaluator would make note of the fact that
she was using a dynamic display device with a communication app functionally and
independently and that should be protected on her IEP. I had assumed
incorrectly.

L stated that based on her observations and reports from the
staff, Maya was “unable to navigate her system independently”. She said that “the
display was overwhelming” and that Maya “didn't have the motor skills to access
the buttons or the keyboard”. She said "when I saw it, even I was
overwhelmed by it." She told me that when Maya wanted to request a drink
it took her “several minutes” to find the correct button. (At which point I could not prevent myself
from interrupting “Hold on. That is simply not true. There is no possible way
that it took her several minutes to find the button for drinks. You are a lying
liar who is falsifying evidence to make your case stronger, but I am smarter
than you realize.” Ok, I may not have said that last sentence aloud, but I
thought it.)

You may be wondering how anyone, even an overconfident biased
gatekeeper, could spend time with the girl in the above video and come away
thinking that her app is anything less than the perfect system for her . . .
but, to be fair and honest, it’s not as simple as that.It is important to note here that Maya often
chooses not to use her talker at school. I am reasonably sure that this is
because the classroom staff models on many different devices (as opposed to
home, where our modeling all occurs through her talker). As professionals know,
aided language input is basically the most powerful tool that communication
partners have----and since Maya is able to code switch with ease, she will
gladly hop on to a TechSpeak, a communication board, a PECS book, or whatever
the teacher is modeling with in front of the small group. She is also using
word approximations with her speaking voice more and more.

However, Maya’s choice to use multi-modal
communication is not in any way indicative that her current AAC device is
ill-fitting or inappropriate, or that she is not able to access it independently.
To the contrary, L was informed that I had “extensive video footage” of Maya
using the device independently at home, but that they did not often see the
same level of usage at school. (Interestingly, L acknowledged that she was told
that such video existed but expressed no interest in actually seeing any of it.
A weird decision,I think--- to intentionally choose not to view evidence of a
child independently using her system before declaring “This child cannot
independently use her system!”)

This conversation was heated, as you may imagine. When I was
able to get a word in edgewise I pushed back, specifically asking "did the
staff say that she is unable to use her device or that she
often chooses not to in favor of using the other systems that
are being used in the classroom" she relented that yes, they said she was
able but refused. However, as our conversation progressed, she often returned
to a language of disability.

The gatekeepers might think that this is semantics, but it’s not.
A child like Maya, stubborn and willfull but flexible and clever, may jump
around to different systems. Or she may entirely reject her system from time to
time—and she’s allowed to do that. Sometimes I don’t feel like talking either. And
there are certain people who I’d prefer not to talk to at all, ever. But there
is choice and there is ability . . . and if she has proved,
repeatedly, that she is able to use a complicated, full AAC system that
can grow well with her and carry her into adulthood . . . then to take that
away is worse than a bad idea. It is a tragedy. It should be criminal. How dare
L call me and tell me that she wants to take Maya’s system away and replace it
with---

Oh yeah. I didn’t tell you what she wanted to replace it with.

L’s recommendation was to
switch to a New App. She wanted Maya on a 15 word display (despite the fact
that she currently uses a 120-word display to independently produce novel
spontaneous utterances). She thinks that because New App uses word prediction
(shifting screens that prompt next word choices) Maya will have greater ease at
participating during certain parts of the school day, like morning meeting. I
was concerned that New App doesn't operate according to LAMP principles, and
that Maya already has learned a large vocabulary using an app that works via motor
planning. L said that since Maya was able to quickly make sentences on New App during the trial, this wasn't a concern. (Maya
could make sentences on anything quickly, she’s a sponge like that.)
I was concerned that New App will allow for fast sentence production, but
robotically (“Today is Tuesday, Today is sunny. I want the blue marker.”)but will take away her spontaneous,
true communication (“Rainy. Tornado! Scary.” ---which might not be grammatically
correct, but it’s creative and spontaneous and way more valuable to me than “I
want the blue marker”). L told me that her only concern was ensuring that Maya
was able to access the curriculum, and that pragmatics and social language were
not her priority.

So basically, we should take away Maya’s only way to communicate
her thoughts and replace it with a system that would that would decimate both
her vocabulary and her ability to speak in a novel, creative manner. Also, the
meager vocabulary that would remain would be reorganized in a system of folders
. . . so a word that she could currently say with 2 taps could take 3 or 5 or 6
taps, and she would need to remember first
tap this folder, then tap this other one, then scroll down and tap another
folder and then there it is! We
should take away her language and give her something “simpler” because you don’t think she is smart enough to
handle her system. Because you underestimate her, and your goals are
consequently minimal. Because she is
stubborn and won’t comply with requests to use her talker, you want to take it
away and give her a system so beneath her long-term (and really, short-term) capabilities
that it is disgusting.

It’s akin to telling Picasso “Show me how you paint. Come on,
show me!” and then when he fails to perform
for you demonstrate his ability, you ignore his body of work, declare
his paints too complicated, and leave him with a pat on the hand and a box of
crayons instead.

(Yeah, that’s right, I just compared my kid to
Picasso.)

If there are gatekeepers reading this, know that you are
potentially dangerous. Make note of Maya. Make note of her, see how wrong one
of your professional brethren was, and carry her with you as you move through your
day’s multiple evaluations. L did not presume
competence. L did not believe that Maya’s code-switching, multi-modal communication
abilities, combined with her stubborn sass, could make her a child who is
oh-so-able but also not-so-compliant. She assumed that my child wasn’t capable
and she assumed that I was a mom who was overestimating her kid, who had bought
an app without doing my research.

And she almost took Maya’s voice away.

Now I know that I’m just a lowly parent, likely misinformed or
uninformed about this newfangled assistive technology wizardry. But before you
cast this essay aside as the ramblings of a biased, over-estimating mother,
allow me to introduce a piece of evidence that supports my case. As it turns
out, L’s DOE evaluation was so late in coming that I had a private assistive
tech evaluation done at a hospital in the city (rushing to have something on
paper for our IEP meeting) two months earlier. This team met with Maya 3
separate times, realizing that she is slow to warm up and unlikely to perform
on demand. When I told them, at the end of a frustrating first session, that I
had video of Maya using the talker independently at home, they were eager to
see it, to understand the full picture of Maya as a communicator. This team wrote
a formal report that basically was an exact negation of L’s recommendations. Here is one paragraph from that report:

During the initial evaluation and when getting to know Maya, it took Maya
some time to feel comfortable using the device on command from therapist.
Rather, Maya appeared to engage in conversation using the device when her
mother and therapists were speaking. Once feeling comfortable with the
therapists, Maya demonstrated ability to find icons in various folders
demonstrating the potential for functional ability to communicate using this
device. With practice at home and in the assistive technology occupational
therapy clinic, Maya has demonstrated with ability to sequence selections.
Additionally, Maya has demonstrated ability to search for icons by typing the
beginning of the word on the on-screen keyboard. It is evident that after searching for one
item, she is able to locate the icon later on in the session suggesting
sufficient carry-over when using the device.

I am an informed parent, and I speak SLP with surprising
fluency. I understand and can debate best practices with regards to device
selection and implementation. I am open-minded enough to carefully consider
suggestions (I even called other AAC specialists to discuss the merit of
possibly switching apps, just to make sure that I wasn’t overlooking something
in my commitment to our current system) . . . but I am also confident enough to
stand my ground.

I am not the typical parent who walks into an AAC evaluation.
And that’s what scares me the most about these gatekeepers. Their
recommendations are often unquestioned . . . or questioned gently. A timid “You don’t think he could handle more than a
TechSpeak?” gets railroaded with “We
can always re-evaluate him next year and maybe by then he’ll be ready for more.
Right now we don’t want to overwhelm him with too many words---you know, he’s
never seen anything like this before. He can practice at school during snack
time for a few weeks, then they can make some activity-specific boards, and
then he could even start using it at home! That’s a lot of things to work on!”

(That’s not a year’s worth of stuff to work on.)

Fight hard, parents. This is your child’s ability to communicate
that you’re fighting for. Children who learn to take conversational turns are
able to become more assertive and independent as they are empowered to speak
up, instead of sitting passively and waiting for someone else to (possibly)
speak for them. Children who learn to combine words and phrases and form
expressive sentences are actually mapping the language parts of their
brains. This is not just about answering
simple questions or requesting a snack, this is about language development,
cognitive development, independence and empowerment.

This should not be blindly left to a gatekeeper. A child’s communication
system should be determined through careful collaboration of the parents,
professionals who regularly work with the child, and the gatekeeper . . . not
to mention the user, if he or she is old enough to reliably indicate a
preference for a particular system.

Educate yourself. If your child has enthusiastic teachers or
therapists, educate them about AAC as well. (Not to be biased, but this post isa decent compilation of resources to get started with.) Go into these evaluations with
some loose ideas of what you think might work. Listen with an open mind, and if
the gatekeeper has a different opinion ask questions like “In which ways do you
think (their suggestion) would be
more appropriate than (your preference)?”
Do not be afraid to push back. Do not get railroaded, do not let them rush
things. This is not just the gatekeeper’s first appointment of the day, this is
your child’s voice.

Do not be afraid to have audaciously high expectations of your
child. Do not let a gatekeeper make you
question your child’s ability or competence.

Finally, to the gatekeepers. I am sorry if you read this and
became infuriated with my misrepresentation or lack of understanding as to your
intentions and responsibilities. I am sorry if you feel like I painted an
unfair picture of what must be a taxing job. But we had 2 evaluations with our
gatekeeper, 16 months apart, and her underestimation of my child (both times) would
have had the potential to destroy a great deal of progress and lower the
expectations of Maya’s educators if not for the fact that I was informed enough
to get mad and fight back. And so, quite honestly, I don’t mind offending
hundreds of you if this blog post empowers even one family to presume competence,
dream big, and fight back.

An important addendum (6/4/13): In hindsight I realize that this post could read as if I am anti-low tech (or no tech) AAC, which I am not. What I am against is the underestimation of kids with complex communication needs.